Winter into Spring

I'm taking a few minutes to break from planning during violin lessons to mess with blog settings and Amazon links. They seem to be working, which means I'm already collecting a little bit towards next year's school materials. This is very exciting. Feel free to use the links below and to the right, and to share like crazy.

The weather has been generous the last couple of days. Sunny, highs in the low 50's, and the garden is responding accordingly. Tulips noses have  been out of the dirt for a few weeks now, and have just shot up. The Sarcococa is still smelly as can be - it saves February from feeling like  an irretrievably dismal month, garden-wise. There are baby cresses still ready for us, and a collection of gorgeous red lettuces in a raised bed. K trimmed back the Munstead lavendars while I snipped dead stuff off the bleeding hearts and freed their new burgundy shoots from the already budding vinca. The sweet woodruff is fluffing up again, and the bronze fennel is throwing feathery copper shoots. Snow is in the forecast for the weekend. Heh.

The girls have decided to put some of their Christmas money toward a 10K in April, this time with Q. So we're training a little differently, because that first 10K a year and a half ago was tough, and that was without pushing the giant boy. Last week we hit 5 miles in intervals, this week we should hit 5.5. It's kind of nifty to be out in the weather this time of year. Aside from the explicit, distracting meanness in a pounding, sunny, 22 degree wind, there's been something rewarding in each of the varying runs over the last couple of months. We pushed a tree off the trail after a couple of big wind storms went through. There are little green shoots in the swampy areas, and ducks appearing on the river again. We've discovered that the girls easily outrun me in the early parts of any given run, while I (usually) end the run at a faster pace than they're running. Except for S, who is faster than all of us, almost all of the time.

The packing of Q for cold weather runs has had it's own learning curve. He wears thermals under a layer of fleece, fleece mittens, hot towels or Hot Feet (the sticky version of Hot Hands), and a fleecy hat and maybe scarf. Tucked around him then is a fleece blanket, a down throw (stolen from a sister) when it's below 30, his fleece-lined black windproof stadium blanket, and then his velcro-ed vinyl enclosure to keep the breeze down even further. It's always interesting trying to keep his face dry (drool) and warm, and unchapped. Olive oil, Eucerin, Traumeel, and Aquaphor have all been helpful with that over the course of winters. We tuck an extra towel into the back of the Wike, too, in case we need to switch out on longer runs. I feel like we've sort of got a handle on this now - which means something is about to change, no doubt.

I guess that's us in a nutshell. Q will have some procedures toward the end of March, combining needs for anesthesia to his advantage. More about that and music and school later.

Hoping you can see some cherry blossoms where you are. If not, find some cherry ice cream or something instead. Here, I'll make some ganache to go with it. We'll share.

Alone, together

This is so, so, VERY good. http://www.exceptionalfamilytv.com/blogs/families/michelle/five-things-you-should-know-about-special-needs-family

Widgets, maybe

I'm adding a widget here so I don't have to reach through the screen and flick somebody's nose at Google.  The last time I tried to do this, Blogger had little wrenches and one could select areas of a template to work on, using those little wrenches.  Was this too easy?  Because I could use something being just. that. easy.  GOOGLE.  Hmph.

Let's see if this works.  We all should be able to use this to shop on Amazon - fingers crossed!

http://www.amazon.com/b/ref=as_li_qf_br_sr_il_tl?_encoding=UTF8&camp=1789&creative=9325&linkCode=as2&node=679360011&tag=durmat-20

I don't think that worked.  Let's try this...

http://amzn.to/1ePTC46

One more time...  AMAZON LINK

Oy vey.

Try, try again

I keep thinking we'll get to a place with a little more breathing room, schedule-wise, but not so far.  E is busy with classes, K and S are busy with school work, they're all practicing like mad, we're getting three runs in a week, and Q is therapy-ing as intently as ever.  I'm writing lesson plans, wrangling paperwork, and trying to shove the medical appointments in where I can.  Which reminds me:  list.  One second...

Okay.  More stuff to schedule Monday morning.

Q had a visit with his physiatrist (rehab doc) this week.  We talked through Artane (a no for now - he's typically more spastic than dystonic), Botox (yes, which means organizing ophthalmology and orthopedics quickly - the ophtho appointment needs to move up from February), and possible equipment needs as we move forward.  I like this doc, though we don't agree on everything.  She's respectful of her patients, the family process, and always checks to see if I think her proposed course of action makes sense or if we need to rethink anything.

The bath seat was a fail, unfortunately.  It's not as tall as it would need to be for one tub, and doesn't allow Q's feet to clear the toilet in the other.  On to the next option.  Meanwhile, we await approval for a car seat and a walker/gait trainer base.

So I've been thinking about what needs we have emerging here for Q over the next several months and years.  More immediately, we have a ramp to pay for, and fundraisers are underway for that.  Next up, a low-tech ramp type set up for the van would be terribly useful.  The chair is 60 lbs, so we all "lift heavy" every day - which is awesome, because we can, the big girls and I (though we have accompanying bruises), and we're glad to be able to, for as long as we can.  But one begins to be mindful of things like effort spread over Q's lifetime, of his continued growth, of our own fallibility.  Okay, my fallibility.  The rest of the Q peeps don't seem to have any trouble naming their end points.  I guess as his mama, I kind of feel like I should just keep going.  Which...  ...mumble, mumble... may not be the most realistic way of managing all the facets of Q care, long term.  Ahem.

Other needs that loom:  a ramp for the back door and more accessible paths and areas in the yard (safety issues); bathroom modifications (hoping to push this off a little longer if we can find a bathing solution - he's outgrowing the bath seat and is too slippery and heavy a fish to continue to zoom in and out of a tub as we have been ); new flooring to replace the carpet (too much drag for a boy on wheels - safety issues).

I have further thoughts on sort of "ultimate" equipment or outfitting options, but the people here are asleep and tomorrow brings an early morning.

Have a lovely weekend, lovely people.  :)

Rundown

My grandmother turned 91 recently.  She's not as well as she has been.  My family descended upon her to sing and chat, one or two at a time, and wish her well.  The brightest moments I saw were when I asked her if she remembered teaching me to read notes when I was four, and then when the girls and I sang hymns and folk songs.  I'd like to see her again soon.

The girls are busy, busy, busy.  The challenges in getting three conflicting schedules met have kind of turned out to be a blessing.  While "stuck waiting," the girls have been able to make good use of practice rooms and library spaces, getting creative with their time in order to manage their goals.  They're working to pay for their orchestra dresses and other music expenses.

One of Q's OTs mentioned today that it's probably time to think about different solutions for bathing.  There's a rolling seat that (I think) cantilevers over the tub so there's no transferring a slippery, heavy kid into and out of tubs.  Right now, E and I lift him in and out, while grandma or K "catch" him in a towel.  So the rolling seat may be available for loan next week.  The possibility of a great solution is pretty exciting.

The house is quiet so it's time to crash. 

Lately

I've been thinking about how life looks these days.  It seems like the kids are each poised for their own leap into something new and huge.  Ready or not, here comes another new incarnation of the family.  Developmental arcs, for the win! 

The plans for the year include new kinds of writing, history, and philosophy, both at home and in other educational and therapeutic settings.  Two of the four will be based offsite for the bulk of their educational endeavors, with some work ongoing at home.  The other two will be based at home, with some outside work.  The schedules need tweaking already - I'm having a hard time getting Latin in.  That may change after the girls have finished with next weekend's performances (orchestra and wedding) and their practices subside just a little.

The girls all continue with piano and violin, working to pay part of the class fees and for most of what is becoming significant instrument expenses.  I'm not sure where I expected all this to lead, but it turns out that practice causes improvement, which brings further opportunity and development, which are expensive.  I mean, hooray for hard work!  And also: whimper.

Q's stuff is also evolving.  We have a ramp for the front door - a serendipitous thing, if ever there was one.  It arrived just as the growing Q started back to school, and came out of the clear blue sky.  No more hauling the 115 pounds of kid and chair up and down the steps!  We have a generous (and kind) arrangement when it comes to the finances, but I still must figure out how to raise $7800.  Actually, $7670, thanks to, well, more kindness. 

There may be a bazillion bake sales in our future.

In other Q news, he had an excellent dental visit Friday - beautiful teeth and not even an attempted nibble on the fingers in his mouth.  He thoroughly charmed the staff, as usual.  They pulled his errant and wobbly "shark" tooth so the new one can finish growing in. There are scripts in the works from his pediatrician for a new walker/gait trainer/stander base and new car seat.  We have a rehab visit coming up next, I am still waiting to hear if we can move ophthalmology up from February (!), and I need to nail down the nutrition consult. Time to schedule another endocrinology visit as well.  The short term big picture involves determining whether or not Q can have botox (for pecs and potentially thenar eminences), eye surgery, and have the hardware removed from his hips, all under the same anesthesia.  We shall see.

The house is quiet, so it's time to crash.  A blessed rest to you, lovely people.

XO.

Week's End

I'm so glad it's Friday.  Deep breath... 

Conversations about Q this week included prospective special needs car seats, since he's truly outgrown the longest, most supportive, "regular" seat I could find.  He's just looong.  So we'll try out possible models in a week and a half.  We really need ramps for the front and back  doors, and for the van - then the conversation would shift a bit, and might even include timing for a possible power chair of his own.  Q also brought home an older Daessy mount (this, sort of) for his iPad, which he is just loving.  The rockstar OT who's working with the power chair trials scrounged and found this in a closet.  I've been scheming over how to manage a support arm like this for a couple of years, so I'll just go ahead and say it: Squee!  There aren't really words for how big a difference it's already made for the boy.  Big, happy sighs.

We have crockpots of spiced apples set to "warm," bubbling away on the kitchen counter.  There's a lovely breeze coming in through the window.  Tomorrow will be above eighty again, after a couple of days of rain.  Earlier, I stuck some chocolate mint into a tub of sugar, and now I'm waiting for the lavender to dry so I can start a new batch.  A couple of weeks ago, we had a bunch of blueberries which were good, but needed to be dessert.  I happened upon a tub of lavender sugar I made last year and had forgotten about in the mug cabinet.  Eyes rolled back in their heads - a drizzle of cream, a sprinkle of lavender sugar, et voila.  A luscious new favorite.

The rain was nice, but since the air stayed so warm, the weeds sure grew.  Meanwhile, the couple hundred green tomatoes are still hanging out (ba-dumpbump).  I keep harvesting Lemon Boys, which are delicious with goat cheese.  Okay, with any cheese. The Zebras are pretty.  Also green.  Sometime over the weekend, I think we'll make another run at the blackberries and thistles, and try to get some of the random naked areas covered with black plastic for winter weed abatement.  The flowering plum and dwarf red anjou need to be put in the dirt.  They were gifts, last fall, and I hadn't settled on their permanent homes before winter, or in the spring.  But we've moved them around the yard and moved them again, and imagined their future leaf canopies, talked about pruning, and now - the shovels.  We also have some curly willow twigs that came out of E's birthday flowers from grandma - they've leafed and rooted, and now it's time for dirt.

The random volunteer perennial babies are also doing well:  lemon balm, bronze fennel, blue hyssop, Hidcote and Munstead lavenders, oreganos, sedums, and chives on steroids.  It's a little nuts, but I can hardly wait to see what spring brings.  The hollyhocks have already thrown a bazillion seeds, and the bee balms have grown enough that I think they'll survive the winter.  And there are pansies coming up all over.  Ahhhh.

I've got school supplies to figure out (fret), and schedules to organize over the next couple of days.  The kids are ready for a full fall schedule, and I'm almost there with them.  I keep wishing I had a couple of extra days just to pull projects together so we're more collected as we begin All the Activities at once.  And more paperwork issues have come to light in the last couple of days, so...  Maybe I'll switch to getting up at 6, so I can have a little time before the kids have to be up?  I wonder if that wouldn't be best, since I'm pretty much fried by the time they're all tucked in and away for the night.

They're all quiet, so I'm taking my musing self to bed.  Happy being grateful for those who Labor Day.

XO.